Newark parents find strength as infant child battles for life

In a society where instantaneous isn’t fast enough, Brandon and Krystal Grumm wait quietly by their son’s bedside.

Time, for them, has stopped here for 11 months. Here, things most people take for granted — breathing, moving, a beating heart — are considered milestones for Braydon, who on Oct. 13 will celebrate his first birthday.

It’s a landmark he will beat odds to reach.

What started out as a seemingly healthy pregnancy took the couple by surprise when, at 22 weeks in utero, an anatomy scan revealed Braydon had a two-vessel cord and was measuring small for his gestational age; because of a condition called intrauterine growth restriction, the Grumms were told there was a possibility he would be stillborn.

On Oct. 2, Krystal was admitted to Riverside Hospital for continual monitoring because Braydon was receiving inadequate placental blood flow.

Eleven days later, he was born, weighing in at one pound, seven ounces. A little more than a 20-ounce bottle of pop.

Krystal waited three weeks to hold him for the first time. On that treasured day, what was supposed to be a one-hour bonding session turned into five hours; Krystal declined taking bathroom or stretching breaks because she didn’t want to part with her son.

“It was the best feeling in the world,” she said.

Shortly after his birth, Braydon received a battery of diagnoses. Genetic testing revealed he had DiGeorge Syndrome, a defect of his 22nd chromosome. Accompanying that were three holes in his heart; bleeding in his brain; and bronchopulmonary dysplasia (BPD), a lung disease that primarily affects infants with underdeveloped lungs.

Braydon was moved to the BPD unit of Nationwide Children’s Hospital, where he would receive specialized lung treatments. A couple months later he was diagnosed with pulmonary vein stenosis (PVS), a blockage of the blood vessels leading from the lungs to the heart.

Desperate to advance his treatment, the Grumms reached out to Boston Children’s Hospital, which specializes in PVS, to see if Braydon could be transferred there; his case was declined.

Instead the couple turned to Cincinnati Children’s Hospital. There, at the end of March, Braydon underwent an 8-hour procedure to close the holes in his heart.

One week later, Krystal received a devastating phone call: Braydon had coded.

She waited for two agonizing hours as physicians performed CPR on Braydon’s tiny body; he miraculously revived and was placed on an ECMO machine for three days to sustain the function of his heart and lungs.

He later received a stent in his left pulmonary vein to prevent it from becoming blocked and had his right lung ballooned to expand it.

On April 20, the Grumms returned to Nationwide, where they remain.

Braydon is still in “critically unstable” condition, Krystal said, because his right lung is hyperinflated and pressing against his ribs, heart and left lung.

“He basically only has one lung working,” she said.

As they wait, the Grumms search for blessings in the everyday things: Reading Braydon a book. Listening to the Moana soundtrack. Playing peek-a-boo when he’s awake.

Krystal describes Braydon as “the happiest baby I have ever seen.”

“He chuckles. He loves his Moana — he loves listening to the music. Whenever we play music for him he smiles,” she said. “When he’s coherent, he’s so happy it melts my heart.”

Krystal spends most of her time by Braydon’s bedside, reading and talking to him. Occasionally she will meet with hospital staff, or the couple will leave the hospital to grab lunch. In 11 months, they haven’t been to their Newark apartment for longer than a quick check-in.

She keeps followers updated on Braydon’s Facebook page, “Prayers for Braydon,” and a friend set up a GoFundMe page to help the family out with expenses. They have been living in the Ronald McDonald House since returning to Columbus; Brandon works weekends to support his family.

There are many times when Krystal wonders how they got here.

“It’s tough. I always think why? Why him? It’s not fair,” she said. “No child should ever have to go through that.”

She doesn’t have an answer to that question, but she has seen positives in the way she has been able to reach out to other parents in similar situations.

One family whom she met at Nationwide overheard her discussing Boston Children’s Hospital with doctors; they asked her about it and were able to take their daughter, only a few months older than Braydon, to Boston. She was treated and has returned to their home in Portsmouth.

“I just hope that, whatever the outcome may be, I can help another parent out,” she said.

The Grumms hope to continue treatment with a catheterization to keep Braydon’s veins open, eventually get him off sedation and return home on a ventilator — but that will take time.

“They’re still quoting us possibly another year before we’re home,” she said.

And so they wait. For a development; a sign; some encouraging news.

For most of the world, time continues to pass at breakneck speed. But Brandon and Krystal stay with their son.

For them — and for Braydon — every moment is precious.

“He is my strength. He really is,” Krystal said. “I just have to be there for him.”

To help

Donations for the Grumm family can be contributed via their GoFundMe page, gofundme.com/prayers-for-braydon. Care packages may be sent to the family at the Ronald McDonald House, 711 E. Livingston Ave., Columbus.